Psychosocial and medical
determinants of long-term
patient outcomes
A specific focus on patients after kidney
transplantation and with haemophilia
L u c i a P r i h o d ova
Copyright © 2014 Lucia Prihodova
Copyright © 2010 John Wiley & Sons, Inc. (Chapter 3)
Copyright © 2011 John Wiley & Sons, Inc. (Chapter 7)
Copyright © 2011 John Wiley & Sons, Inc. (Chapter 10)
Copyright © 2013 John Wiley & Sons, Inc. (Chapter 8)
Copyright © 2013 John Wiley & Sons, Inc. (Chapter 9)
Copyright © 2014 Lippincott Williams & Wilkins (Chapter 4)
Copyright © 2014 John Wiley & Sons, Inc. (Chapter 5)
Copyright © 2014 Lippincott Williams & Wilkins (Chapter 6)
Thesis for the University of Groningen, the Netherlands – with a summary in Slovak and Dutch.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system
or transmitted in any form or by any means electronic, mechanical, photocopying, recording
or otherwise, without prior written permission of the author.
Correspondence: luciaprihodova@gmail.com
This work was supported by the Science and Technology Assistance Agency under contract
APVV-0220-10 (80%). Furthermore, this work was partially supported by
the Agency of the Slovak Ministry of Education for the Structural Funds of the EU,
under project number ITMS:26220120058 (20%).
The printing of this thesis was supported by the Graduate School for Health Research (SHARE),
the Graduate School Kosice Institute for Society and Health (KISH), University Medical Center
Groningen (UMCG) and the University of Groningen (RUG).
Design and layout: Lucia Prihodova, Dasa Kosztankova (Dupla)
Book cover: Dasa Kosztankova (Dupla), www.duplacreative.com
Language proof: David L McLean
Press: Garamont Nitra
Printed in the Slovak Republic
ISBN: 978-90-367-7142-9
ISBN: 978-90-367-7141-2 (electronic version)
Psychosocial and medical determinants
of long-term patient outcomes
A specific focus on patients after kidney
transplantation and with haemophilia
Proefschrift
ter verkrijging van het doctoraat
aan de Rijksuniversiteit Groningen
op gezag van de
Rector Magnificus prof. dr. E. Sterken
en volgens besluit van het College voor Promoties.
De openbare verdediging zal plaatsvinden op
Maandag 29 september 2014 om 16.15 uur
door
Lucia Prihodova
geboren op 23 april 1983
te Sala, Slowakije
Promotor
Prof. Dr. J.W. Groothoff
Copromotores
Dr. J.P. van Dijk
Dr. I. Rajnicova-Nagyova
Safarik University Kosice, Slovak Republic
Dr. J. Rosenberger
Safarik University Kosice, Slovak Republic
Beoordelingscommissie
Prof. Dr. R.T. Krediet
Prof. Dr. R. Sanderman
Prof. Dr. W.J. van Son
Ps ych o s o ci a l a nd med ic a l d etermina nt s of long - term p atient outcomes
C o n te n ts
Chapter 1. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Introduction
Chapter 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Data sources
PART I Quality of life and patient outcomes in kidney transplant recipients . . . . . . . . . . . . . . . 37
Chapter 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Impact of personality and psychological distress on health-related
quality of life in kidney transplant recipients
Chapter 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57
Health-related quality of life 3 months after kidney transplantation
as a predictor of survival over 10 years: a longitudinal study
Chapter 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Adherence in patients in the first year after kidney transplantation and its impact
on graft loss and mortality: a cross-sectional and prospective study
Chapter 6. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
Social participation after kidney transplantation as a predictor of graft loss
and mortality over 10 years: a longitudinal study
Part II Quality of life and access to treatment in patients with haemophilia . . . . . . . . . . . . 111
Chapter 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113
Haemophilia care in Europe: a survey of 19 countries
Chapter 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
Haemophilia care in Europe: a survey of 35 countries
Chapter 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147
A survey of the outcome of prophylaxis, on-demand treatment
or combined treatment in 18–35 year old men with severe haemophilia in six countries
Chapter 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161
A survey of the outcome of prophylaxis, on-demand or combined treatment
in 20–35 year old men with severe haemophilia in four European countries
Chapter 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167
General discussion, implications and conclusions
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187
Samenvatting. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 193
Zhrnutie . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197
Acknowledgements. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 203
About the author. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 207
Graduate School Kosice Institute for Society and Health (KISH) and previous dissertations. . 211
Groningen Graduate School of Medical Sciences
– Research Institute SHARE and previous dissertations. . . . . . . . . . . . . . . . . . . . . . . . . . . . 217
Abbrev ia tions
ANOVA
Analysis of covariance
BP Bodily Pain
CCC
Comprehensive care centre
CCI
Charlson Comorbidity Index
CI
Confidence interval
CKD-EPIEstimated glomerular filtration rate assessed by Chronic Kidney Disease
Epidemiology Collaboration Equation
CSE
The Coping Self-Efficacy Scale
DDAVP
Desmopressin acetate
eGFR
Estimated glomerular function
EHC
The European Haemophilia Consortium
EPQR-A
The Eysenck Personality Questionnaire Revised – Abbreviated
EQ-5D
The EuroQOL five dimensions questionnaire
ESRD-SCL-TM
The End-Stage Renal Disease Symptom Checklist – Transplantation Module
EU
The European Union
FVIII/ FXI
Coagulation factor VIII/ XI
GH Perception of general health
GHQ-12
The General Health Questionnaire-12
GLM
General linear model
HR
Hazard ratio
HRQoL
Health-related quality of life
HTC
Haemophilia treatment centre
ITI
Immune tolerance induction
IU
International units
KT
Kidney transplantation
MCS
Mental Component Summary
MH Mental Health
MSPSS
The Multidimensional Scale Of Perceived Social Support
NHC
National Haemophilia Council
NMO
National member organisation
PCS
Physical component summary
PF Physical Functioning
RE Role Limitation Attributable To Emotional Problems
P s ych o s o ci a l a nd med ic a l d etermina nt s of long - term p atient outcomes
RP Role Limitation Attributable To Physical Problems
RRT
Renal replacement therapy
SF Social Functioning
SF-36
The Short Form Health Survey Questionnaire
SP
Social Participation
VIF
Variance inflation factor for Multicollinearity
VIT Vitality
WFH
The World Federation of Haemophilia